United States: Genetic Non-Discrimination Bill Signed Into Law

After thirteen years of consideration, legislation
prohibiting health insurance companies and employers from
discriminating against individuals based on genetic information
was signed into law on May 21, 2008.

The Genetic Information Nondiscrimination Act (H.R. 493)
(GINA) balances the benefit of using genetic information for
medical advances and care management with the potential for
harm that could be caused by the misuse of genetic information.
Through a bipartisan effort, Congress reduced the potential for
harm by creating Federal standards for prohibited and permitted
uses by insurers and employers of an individual's
genetic information.

An individual's genetic information is defined in
GINA as "information about (i) such individual's
genetic tests, (ii) the genetic tests of family members of such
individual, and (iii) the manifestation of a disease or
disorder in family members of such individual." It also
includes "any request for, or receipt of, genetic
services, or participation in clinical research which includes
genetic services, by such individual or any family member of
such individual." Additionally, genetic information
related to an individual or family member of an individual
includes the genetic information of any fetus carried by a
pregnant woman and the genetic information of any embryo
legally held by an individual or family member using assisted
reproductive technology. Genetic information does not include
information about the gender or age of an individual.

Regulation Of Insurers

GINA regulates insurers, including those covered by the
Employee Retirement Income Security Act (ERISA), state
regulated plans, and the individual market. Group health plans,
including small group health plans, health insurance issuers
offering health insurance coverage in the individual market,
non-federal governmental plans and issuers of Medicare
supplemental policies are all subject to nondiscrimination
provisions in GINA.

Group health plans and health insurance issuers offering
health insurance coverage in the individual market are
prohibited from using genetic information to adjust premiums or
contribution amounts for a group or individual. Additionally,
they are proscribed from requesting or requiring an individual
or family member of an individual to undergo a genetic test.
Health insurance issuers offering health insurance coverage in
the individual market are also prohibited from establishing
eligibility rules for enrollment based on genetic information
and from imposing a preexisting condition exclusion on the
basis of genetic information.

Similarly, issuers of Medicare supplemental policies are
prohibited from denying or conditioning the issuance or
effectiveness of a policy based on genetic information, nor may
they impose an exclusion of benefits based on a preexisting
condition due to genetic information. Issuers of Medicare
supplemental policies are also barred from discriminating in
the pricing of a policy, including the adjustment of premiums,
based on genetic information.

Insurers are prohibited from requesting, requiring or
purchasing genetic information for underwriting purposes.
However, insurers may obtain and use the results of genetic
tests to make determinations regarding payment, consistent with
other provisions of the Act, as long as they only request the
minimum amount of information necessary to accomplish the
intended purpose. Moreover, GINA specifically provides
exceptions to general rules for genetic tests for research
purposes. Insurers may request, but may not require, an
individual to undergo a genetic test for research purposes if
(a) the research complies with the Common Rule (part 46 of
title 45, Code of Federal Regulations); (b) it is clearly
specified that compliance with the request to submit to genetic
testing is voluntary and that refusal to undergo the test will
not impact enrollment status or premium or contribution
amounts; (c) they notify the Secretary of the Department of
Health and Human Services that such activities are being
conducted; (d) they provide the Secretary with a description of
the activities; and (e) they comply with other requirements set
forth by the Secretary.

GINA amends the privacy regulations promulgated pursuant to
the Health Insurance Portability and Accountability Act of 1996
(HIPAA) by prohibiting the use or disclosure by a group health
plan, health insurance issuer, or issuer of a Medicare
supplemental policy of genetic information about an individual
for underwriting purposes. GINA also specifies that genetic
information should be treated as health information for the
purposes of HIPAA.

Regulation Of Employers

Employers, employment agencies, labor organizations and
joint labor-management committees also are prohibited from
discriminating against an employee, individual or member based
on genetic information. Employers may not refuse to hire or
discharge an employee, or otherwise discriminate against an
employee with respect to compensation, terms, conditions, or
privileges of employment on the basis of genetic information.
Likewise, employment agencies are prohibited from failing or
refusing to refer an individual for employment based on genetic
information, and labor organizations may not exclude or expel a
member due to genetic information.

Employment agencies, labor organizations, and joint
labor-management committees are prohibited from causing or
attempting to cause an employer to discriminate against a
member in violation of GINA. Employers, labor organizations,
and joint labor-management committees also are prohibited from
discriminating against an individual regarding admission to, or
employment in apprenticeship or training programs.

Additionally, employers, employment agencies, labor
organizations and joint labor-management committees are
prohibited from limiting, segregating, or classifying
employees, individuals or members based on genetic information
in a manner that would deprive or have a propensity to deprive
the individuals of employment opportunities or have an
otherwise negative impact on their status as employees. They
are prohibited from requesting, requiring or purchasing an
employee's genetic information except in specified
circumstances, including when the entity:

Inadvertently requests or requires family history of the
employee or family member of the employee;

Offers health or genetic services and certain conditions
are met, such as obtaining an individual's voluntary,
written authorization, and disclosure to the entity is
limited to aggregate terms that do not disclose the identity
of an individual;

Requests or requires family medical history to comply
with certifications required by the Family and Medical Leave
Act;

Purchases commercial and publicly available documents
that include medical history;

Uses the information for genetic monitoring of the
biological impact of toxic substances in the workplace, and
certain conditions are met; or

In certain circumstances, conducts DNA analysis for law
enforcement purposes as a forensic laboratory and requires
such analysis for quality control purposes.

In cases where employers, employment agencies, labor
organizations or joint labor-management committees obtain an
individual's genetic information, they may not use the
information for discriminatory purposes. The genetic
information must be maintained in separate medical files and be
treated as a confidential medical record of the employee. These
entities may only disclose such information in specified
instances, such as: (a) at the written request of an
individual; (b) to an occupational or other health researcher
if the research is conducted in accordance with the Common Rule
(part 46 of title 45, Code of Federal Regulations); (c) in
response to an order of a court; (d) to government officials
investigating compliance with GINA; (e) if the disclosure is
needed in connection with the employee's compliance
with the certification provisions of the Family and Medical
Leave Act; or (f ) to a Federal, State or local public health
agency with respect to information related to a contagious
disease that presents an imminent hazard of death or
life-threatening illness. These provisions of the statute
create one of the greatest potential traps for employers as
they do not authorize disclosure in response to discovery
requests or even a subpoena. Thus, employers responding to such
requests will need to take special care to ensure that
information which falls within the definition of "genetic
information" is withheld and maintained in confidence.

As with other non-discrimination statutes, employees who
believe that they have been discriminated against in violation
of the law must file a charge of discrimination with the Equal
Employment Opportunity Commission. If litigation is filed in
federal court, a prevailing plaintiff may recover any damages
authorized by the Civil Rights Act of 1991, including
compensatory damages, back pay, front pay, and equitable
relief.

In a provision unrelated to the genetic information purposes
of the Act, the law also amends the Fair Labor Standards Act to
increase the penalties for child labor violations which result
in death or serious injury.

Conclusion

The new Federal law follows many state laws already enacted
which relate to genetic discrimination in employment and health
insurance. However, GINA is even more far-reaching because it
imposes nondiscrimination provisions on ERISA plans, something
that states are not permitted to do.

Although GINA provides individuals with some important
protections, GINA is not a panacea. Some critics have indicated
that GINA does not go far enough. For example, GINA does not
prohibit discrimination against individuals once they have
manifested a condition. GINA is also limited to health
insurance; it does not cover other types of insurance, such as
life insurance. On the other hand, GINA also has been
criticized for being unnecessary, burdening employers when
there is little evidence of abusive practices by employers, or
potentially interfering with an insurer's ability to
request certain genetic tests to ensure proper treatment for an
enrollee.

GINA attempts to balance potential medical advances, such as
using genetic information to permit the early detection of
illnesses, enable individuals to take preventive steps to
decrease their likelihood of contracting a disorder, or develop
effective therapies, against the potential for misuse of the
information. The ultimate impact of GINA on an
individual's interest in obtaining genetic information
and on preventing discriminatory practices remains unknown.

Practical Tips For Employers:

The statute will not go into effect for 18 months, but
employers should look for the Equal Employment Opportunity
Commission to publish regulations interpreting the new law
within the next year.

Employers should review their discrimination policies now
to ensure that they cover genetic information.

Employers should carefully review and revise documents
soliciting medical information (e.g. post-offer medical
examination records, fitness for duty records, or other
authorizations for the release of medical records) to ensure
that they specifically exclude questions requesting genetic
information, unless there is a direct and compelling need for
the information.

Employers should roll-out training on this new law for
managers. This would be a good time to refresh training on
all types of discrimination, harassment and retaliation and
to tie in the new provisions of your Company's
policies.

The content of this article is intended to provide a
general guide to the subject matter. Specialist advice should
be sought about your specific circumstances.

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Companies must train front-line managers to be on the lookout for signs that an employee might need a job accommodation because workers who want help when a medical issue hinders their job performance don't always clearly ask for it.

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